Medicinal Products
Dail Éireann — 2026-04-29
============================================================

Louis O'Hara (SF), Galway East

I am also here to speak about Friedreich's ataxia. On Monday evening, I met Aoife Quinn from County Galway, who was diagnosed with Friedreich’s ataxia in 2021. She outlined to me her long pathway to getting a diagnosis for this rare disease and how the disease impacted on her life. She told me of her experience dealing with symptoms like loss of balance and speech difficulties and of how her symptoms had deteriorated over time. Every day brings her a loss. It is a relentless and progressive disease.
The reimbursement of Skyclarys would slow the progression of this disease and give her the chance to maintain her strength and independence for as long as possible. She is just one of approximately 200 people across the State who are living with Friedreich's ataxia. Access to this treatment would also help those who are newly diagnosed, who may be spared some of the suffering experienced by those before them.
I am aware that the HSE is engaged in negotiations with the drugs manufacturer, but as of today the negotiations will have been going on for almost two years. Every single day that passes, Aoife's condition worsens, as it does for every person who is suffering from this disease. The clock is ticking for them and they cannot face more delays. This drug is an opportunity to slow the deterioration - in Aoife's case before she is wheelchair bound or suffers other issues. She does not have time to wait.
We all understand that there must be a process where the HSE negotiates to get the best possible price for medicines but we need to see real urgency here because every day that passes matters. Aoife has also expressed her frustration that she is not kept updated on the negotiations and that there is not regular contact with her on that. Will the Minister of State look at that?
The bottom line is that these people do not have the luxury of time. Every day that passes without the medication is a day where symptoms deteriorate. They do not have time to be left waiting in the dark, wondering whether a medicine that could improve their lives will be reimbursed. Will the Minister of State provide clarity today or give a commitment that this will be resolved soon?

---

Source: Houses of the Oireachtas. Licensed under CC BY 4.0 (https://creativecommons.org/licenses/by/4.0/). The Official Report is revised after first publication; the fetch timestamp below identifies the version quoted.

Record URI: https://data.oireachtas.ie/akn/ie/debateRecord/dail/2026-04-29/debate/main
Retrieved: 2026-09-21T01:01:08+00:00
Sitting date: 2026-04-29